Global bioethics blog

Thursday, August 16, 2012

Medical tourism is a burgeoning
global industry. The nature of the market is governed by economic realities:
demand for medical services comes from those with money (normally, those from
affluent nations) and the supply or execution of those services fall to
entities in developing countries. Consider the growing “rent-a-womb” business
in which couples from wealthy nations outsource gestation to surrogate laborers
abroad, especially in India. The practice has been hailed as a win-win for both
the couple and surrogate mother, most notably on Oprah in 2007. Frustrated couples who have exhausted fertility
options and/or cannot afford surrogacy in their home countries take advantage
of a cheaper alternative abroad and ultimately return home with a smiling (or
crying) baby in arm; on the other hand, surrogate mothers earn sums they could
only have dreamed of previously, creating, presumably, a brighter future for
their families.

But if one digs beneath the warm,
fuzzy veneer projected by the industry, one finds an undersoil less fruitful than
a surrogate mother’s womb. Mother Jones recently published an exposéof the industry that reveals unfortunate
realities on the ground. For example, surrogate “laborers,” the
poverty-stricken carriers of privileged Western fetuses, are often required to
live in modest residential dormitories away from their families for the entire
duration of the pregnancy, resigning their freedom of movement. New economies are
developing as outgrowths of the industry as “recruiters” are hired to scour the
slums for women open to the surrogacy-for-money scheme. Exploitation becomes an
ethical consideration whenever there is a hierarchical system in which the
wealthy seek services from the poor. When a woman living in the slums of
Chennai is offered money (a fortune to her and a mere drop-in-the-bucket for
her hirer) to lease her womb to a Western couple for 9 months, how much of a choice
actually exists when the alternative is the status quo? Poverty is the
figurative gun held to the woman’s head as she mulls her “choice.”

There are even larger questions, however. Should
surrogate motherhood be forbidden as in some countries like the Netherlands,
France, and Japan? If not, should surrogate motherhood be strictly voluntary
without any financial incentive? One thing is for sure: if the practice of
surrogacy is to continue (which I believe it should, as an option for those
couples who have exhausted all other avenues to fertility), it needs to be
regulated to reduce exploitation and protect the rights of surrogate mothers.
As it stands today there “are no rules” regarding surrogacy in India according
to a local health official. No official guidelines exist on a local or national
level in India, and the entire industry operates un-policed. But the acts of
surrogacy—carrying a fetus and enduring labor—are not benign undertakings
devoid of risk, and those bearing these risks deserve protections. Who, for
example, should cover the costs associated with a surrogate mother’s health care
should she develop a condition related to childbearing in the perinatal period?
Unfortunately, the case of Easwari, a surrogate mother who died of severe
post-partum hemorrhage, illuminates the industry’s lack of preparedness to deal
with these situations. Easwari was told that no help could be found at the
clinic that had hired her and was instructed to pay her own transport expenses
to a local hospital. She died en-route. Responsibility for the surrogate
mother’s health care ended at delivery, apparently.

Guest post by David Kennedy,Medical student, University of North Carolina-Chapel Hill

Monday, August 06, 2012

Update: ethics of drug addiction research in China

When we last left off with this story, Human Rights Watch (HRW) raised questions about a published research study conducted among Chinese drug users in what are called local 'drug rehabilitation centers'. The main questions raised by HRW were: (a) did the study population include participants who are receiving compulsory treatment at the centers by court order or were there also volunteers? (b) do persons at the drug rehabilitation centers receive internationally recognized standard of care for their addictions, as international research ethics codes require? (c) if the conditions in such centers (as some allege) human rights abuses including forced labor, should researchers be conducting studies with detainees in such facilities at all? (d) why, if co-authors of the study included investigators from the US National Institute of Drug Abuse (NIDA), was the study apparently not reviewed by a research ethics committee in the United States?

There is a response by the research team to these concerns in the Letter to the Editor section in Science this week that looks anything but adequate. The responses basically come to the following: (a) we did not see any abuses take place (b) the participants did not mention any of the alleged abuses (c) if there were abuses, this would have violated Chinese law (d) the study was approved by the ethics committee of the Peking University Health Center (e) only the court-mandated drug users who gave their consent, and told they could refuse to be in the study, were enrolled (f) those enrolled in the study were offered cognitive behavioral therapy (CBT), and withdrawing from the study did not entail losing their eligibility for the usual treatment offered in Beijing treatment centers. All of this is capped off by a description of Beijing drug treatment centers that is positively glowing, and does not cohere with investigative reports of the same centers.

The research team's response is unlikely to satisfy those who question the ethics of these studies. Abuses could be taking place, even if researchers did not see them, and even if participants (for good reason) did not mention them. These treatment centers could be breaking Chinese law, and if so, the fact that the study was approved by the ethics committee in Beijing just shows the limitations of ethics review. That the research participants consented and told they could refuse to participate is a necessary but not sufficient condition of this study (and any study) being ethical. Offering CBT is fine, but the question is what is the standard of the usual treatment in such centers? If it is lousy care, then participants may join the study purely to receive what they should get at a treatment center anyway: is participation then 'voluntary'? And as for the concerns about the nature of the involvement of NIDA in the study, there is no response at all.

Some bioethicists in the US and China believe that human rights activists have been unfairly criticizing an innocuous and useful study just to highlight conditions in Chinese drug treatment centers. But this is part of the question: should even innocuous and useful studies be conducted in sites where (allegedly) human rights abuses are taking place? Can the ethics of research studies and the environment in which they are conducted be easily disentangled?